u/SmrtDllatKitnKatShop

I'm near 4w po...I had the "big hole in my gut" surgery (cancer and endo). My incision is healed. But the interior one is awful. Any pressure over top where the stitches are is still super sensitive/painful. The "bruised feeling" and any real pain is gone, but its sharp and feels like pinch if I move wrong or if I'm upright (at desk) or walking more than like an hour. I have a bad back, so used to compensating with stomach, thighs...can't sleep but flat on my back now...swelling is down but still "feel" like my stomach is just out there....

6-8wks is obviously not going to be long enough healing time.....

Anyone else have the large incision? I'm tired of hearing how great the laproscopy folks feel after 4wks when I feel like a war wound...

I had posted about how discovery to surgery was quick - I had a fast growing tumor in my uterus. My surgery was always going to be abdominal (no laproscopic) due to previous surgeries and concerns about cancer.
It was supposed to be 1.5hrs, turned into 3.5 hrs. I had complications and instead of discharge next day, I went home nearly a week later. I collapsed that night (low hemo count, stress) and ended up getting an ambulance ride to hosp. Where I stayed under observation for 2 more days. I'm finally home, bruised, weary and still tender.

And honestly a bit angry. The surgery took so long because of extensive endometriosis and scarring. Basically everything in my belly was mashed together with it. Bladder, bowels, colon, stomach, not to mention all my reproductive organs.

What makes me mad? I've been suffering from bladder control issues, told I had gastritis, IBS, etc. Told the odd pain in my upper abdomen was in my head. Told my stomach issues were all stress related and I just had anxiety. For nearly TEN FREAKING YEARS. I've been wearing diapers and a sneeze would make me lose all control over my bladder - I was humilated at a convention at my artist table because I soaked my pants and couldn't change - I tried to "dry" them as well as I could and spent the rest of the day in damp, pants convinced everyone could smell the urine.

Two weeks post op and that weird stomach pain is gone. I've coughed, sneezed, and no urine leak. My bowels and colon are still a bit iffy, but better than before. I am eating small meals just fine. TEN FREAKING YEARS - I asked. I'd had an issue with Endo back in my 20s and had surgery then. I asked, had it come back? Went to specialist after specialist with normal test results and told I was fine. A gyno completely dismissed me. It wasn't until I turned 56 and was still having bleeding and it got rather serious since January that I got anyone interested and that wasn't even related to Endo.

I know they don't consider endometriosis to be "serious". Its non-fatal, benign. But the issues with my uteris paled in comparison to the effects of the endo. It affects organ function on every organ it touches. Fatigue so bad, I couldn't get more than a couple hours without literally falling asleep on my feet. Pain that left me curled up and so desperate I'd put a lidocaine patch on my belly. Stomach so bad, I'd end up living on meal replacement shakes nearly every month. Weight gain that I couldn't lose no matter what.

Doctors need to take it more seriously. I'm tired of hearing stories like mine where its never found until late, and almost always "while we had the patient open on the table". I lost 10 years, 10 productive years, 10 years of travel, 10 years of joy, of paint free life.

I'm going in on Wednesday and I'm spinning and a bit scared. The NP is like, no big deal. I'll be up and at em within a couple weeks. But an 6-8 inch opening in my abdominal wall seems like it'd take longer. (I had 3 kids natural and due to complications, labor was very fast) - is it like a c-section? My friend just delivered her baby and was up and at the shop (visiting) within like a week.
Trying to set realistic expectations for myself. I'm going to have a big vertical scar not some tiny "holes" and I have had previous laproscopic surgeries, so my belly has a lot of scarring inside.

I'm having the big surgery (all associated organs, endo etc. and with the pubic to belly incision). The NP keeps saying I will be fine to go home the day after the surgery (less than 24hrs, more like maybe 8-10 after.... crap insurance....) I'll hav e a pressure dressing (vacuum) and belly binder.

Partner and I have to drive across 2 states to go from Eastern Panhandle of WV to Morgantown. That's 2.5-3 hours one way. He got a hotel room for himself the night of and for us both the night after - if any complications, figure it would mostly likely happen within 24-48 hours and we don't want to be in the middle of Pennsylvannia looking for an ER if I start bleeding.

I've been all over the papers they sent me home with on the consult, and checked everything in their "my chart" but so many holes for me. I'm neurodivergent and need lists and things spelled out for me. I've been dealing with a chronic illness for 30 years and so many proceedures, but felt more informed going in for those.

I've tried reaching out to the surgeon/onocologist because I see they will send me home with laxatives, tylenol, motrin and gabapentin. I do NOT want the gaba - was on it for 3 years and developed nerve issues, etc that are documented side effects (bad ones). I'm also allergic to codiene and can't take derivatives - pain management is always a hassle for anything. So now, I'm scared about pain after.... I saw some mentioned "Special gummies" to sleep - anyone try that?

My house is 3 floors, 2 sets of steep indoor steps and several smaller ones to get in. How do you guys navigate stairs after? I have a bad knee so use handrail and a cane, but NP blew me off saying a "few stairs is okay" but kitchen is downstairs, bedroom and all full baths are upstairs...

I have a chronic cough - how do I do that with a belly full of stitches? Any advice or techniques for clearing lungs?

My partner is wonderful. He's taking 12 days off to be here while I recuperate and he's worried about after those 12 leaving me here on my own. He can't get FLMA because we aren't married, doesn't qualify. NP says I'll be fine on my own and don't need any help with showering or getting up and down (I'm 220lb and bad knees and bad back, I can't lay flat on my back at all, damage to spine means it puts pressure on the nerves and my legs fall asleep). I have a recliner - anyone have any advice on where or how to lay, sit, etc. after?

What did you guys eat the days/week after? What should I bring to the hospital. They just tell me to leave my hearing aides and jewelry at home (I'm only HOH, not deaf).

My local gyno is amazing, calm and caring. He referred me specifically to a gyno-onocologist to do my hysterectomy (uterine cancer still considered high probability).

I had to drive 2.5 hr to my state's "cancer center". And I get this operation is routine for the surgeon, but its not for me. Part of why my local gyn wanted a specialist is because I have a 36 year history with endometriosis/ scaring and adhesions (to bowels). My last lapro (gall bladder) the surgeon said too much scar tissue in my belly. I went for what I thought was a consult, wrote my questions down.

Immediately I'm told to disrobe - she left me a pillow case by accident so I had to go digging for a clean sheet. He is in his suit, no name tag, no coat and his scribe following. He sits on the stool, asks for a paper and says June 3rd okay. Has me sign the consent form, never taking his hand off of it (so I never got to read it). Tells me how he's gonna to do a vertical incision, put a wound vacuum dressing and send me home the next day (ride in a truck for 3 hrs home) to recouperate. No discussion of ANYTHING. I have a damaged back, I can't lay on my back. What about pain management post op? What about pathology results?

He does a quick rude "look" at my cervix, and just leaves, leaves his scribe to finish entering my surgical history etc. I FINALLY get to put my pants back on waiting for his nurse to bring me the pre-op instructions. I was crying ya'll. When they asked me to undress, I had my partner do to a "living room" waiting area (thinking the consult part would follow, he wanted to be there). After the nurse, she literally walks me to the front doors and I can't find my partner anywhere... I wandered back on my own and a nurse on break asked if I was lost - she showed me that my partner was dumped clear down the other side of the hall (no cell service).

The nurse was kind, gave me a tissue, showed me the packet. No info on overnight for my partner, no info on anything other than if I have issues at home to go to the ER.

I'd been having bleeding or light periods this whole time (I'm 56) but a few months ago they became heavy, painful like during my young adult years. So I went in. PCP immediately scheduled a US and then the referral. My US showed lining was >11cm thick in many places. So he harrassed the local Gyn to see me immediately. Got in within a week. He schedules a unterine biopsy for the next week. 2 wks for results and yesterday was that appointment.
I didn't quiet catch everything he said (HE had wide eyes and admitted he thought it was benign and was going to put me on hormones, "haven't seen this before".) I need a hysterectomy. And he won't do it, though he is listed as a surgeon (does bladder, hysto, etc.) He says he wants a gyn-onocologist to do it.
Issue is I have serious scarring and adhesions from endometriosis from my 20s. My last surgery as lapro for gall bladder and the surgeon chewed ME out for the scarring and difficulty. Said flat out, no more "tiny hole surgeries thru your stomach". Is this why he won't do it?
Gyn sent referral for a gyno-onocologist. Said I should hear back within the week.
Today I get a call from the cancer center in my state - they got my biopsy results and wanted to schedule me for a consult tomorrow - I live like 2.5hrs away.
Gyn said to me on Monday that the cells were 'atypical' and words like stage 1, but he's recommended the oncologist do the surgery AND do a lymph node biopsy...
I'm so confused. Is it normal for this to be going this fast? And why does he say 95% survival chance and it may not be cancer but then calls the onocologists office multiple times in 24hrs??? And after they review my results - why do they want to see me tomorrow?
I guess I just need to know what was the time frame for you if you faced this issue.
He tried to reassure me yesterday, but he never showed me the results or even had his laptop in there, just a post it with the dr name on it. Is there something I should be doing or questions that I should be asking at the consult appointment with the oncologist?